Muscular Dystrophy is a group of genetic muscle diseases that cause progressive damage and weakness to the muscles. There are over 100 forms of muscular dystrophy. Some symptoms are inability to walk, calf pain, and poor balance. Physical therapy, wheelchairs, and standing frames are all helpful in the treatment of MD, but there is no known cure. Regular stretching is important in maintaining the range in motion of the muscles.
Caring for a Child With Muscular Dystrophy
Though there's no cure for MD yet, doctors are working to improve muscle and joint function, and slow muscle deterioration in kids who are living with the condition.
If your child is diagnosed with muscular dystrophy, a team of medical specialists will work with you and your family. That team will likely include: a neurologist, orthopedist, pulmonologist, physical and occupational therapist, nurse practitioner, cardiologist, registered dietician, and a social worker.
Muscular dystrophy is often degenerative, so kids may pass through different stages as the disease progresses and require different kinds of treatment. During the early stages, physical therapy, joint bracing, and the medication prednisone are often used. During the later stages, doctors may use assistive devices such as:
• physical therapy and bracing to improve your child's flexibility
• power wheelchairs and scooters to improve your child's mobility
• a ventilator to support your child's breathing
• robotics to help your child perform routine daily tasks
Physical Therapy and Bracing
Physical therapy can help a child to maintain muscle tone and reduce the severity of joint contractures with exercises that keep the muscles strong and the joints flexible.
A physical therapist also uses bracing to help prevent joint contractures, a stiffening of the muscles near the joints that can make it harder to move and can lock the joints in painful positions. By providing extra support in just the right places, bracing can extend the time that a child with MD can walk independently.
If a child has Duchenne muscular dystrophy, the doctor may prescribe the steroid prednisone to help slow the rate of muscle deterioration. By doing so, a child with muscular dystrophy may be able to walk longer and live a more active life.
There is some debate over the best time to begin treating a child with prednisone, but most doctors prescribe it when a child with MD is 5 or 6 years old, or when the child's strength begins to show a significant decline. Prednisone does have side effects, though. It can cause weight gain, which can put even greater strain on a child's already-weak muscles. It also can cause a loss of bone density and, possibly, lead to fractures. If your doctor prescribes prednisone, he or she will closely monitor your child.
Many children who have the Duchenne and Becker forms of muscular dystrophy develop severe scoliosis - an S- or C-shaped curvature of the spine that develops when the back muscles are too weak to hold the spine erect. Some kids who have severe cases of scoliosis undergo spinal fusion, a surgery that can reduce pain, lessen the severity of the spine curvature so that a child can sit upright and comfortably in a chair, and ensure that the spine curvature doesn't have an effect on the child's breathing. Typically, spinal fusion surgery only requires a short hospital stay.
Many kids with muscular dystrophy also have weakened heart and respiratory muscles. As a result, they can't cough out phlegm and sometimes develop respiratory infections that can quickly become serious. Good general health care and regular vaccinations are especially important for children with muscular dystrophy to help prevent these infections.
A variety of new technologies are available to create independence and mobility for kids with muscular dystrophy.
Some kids with Duchenne muscular dystrophy may use a manual wheelchair once it becomes difficult to walk. Others go directly to a motorized wheelchair, which can be equipped to meet their needs as muscle deterioration advances.
Robotic technologies also are under development to help kids move their arms and perform activities of daily living.
If your child would benefit from an assistive technological device, it's a good idea to contact your local chapter of the Muscular Dystrophy Association (see the Additional Resources tab for a link to their website) to ask about financial assistance that might be available. In some cases, health insurers cover the cost of these devices.
The Search for a Cure
Researchers are quickly learning more about what causes the genetic disorder that leads to muscular dystrophy, and about possible treatments for the disease. If you'd like to know more about the most current research on muscular dystrophy, contact the local chapter of the Muscular Dystrophy Association, or talk to your child's doctor.
Footnotes: Clark, A. (August 2005). Muscular Dystrophy. In Kids Health for Parents. Retrieved July 26, 2007, from http://www.kidshealth.org/parent/medical/genetic/muscular_dystrophy.html.
Contributed by Shakima Bates